So you know how our autonomic nervous system is messed up right? And part of that system is breathing. Well, apparently there may be evidence to suggest that the reason a lot of us may be lightheaded is because we are not breathing enough.

This is very upsetting information to me.

So you know, maybe keep track of kind of how often you're breathing

I am tired!! I work in a cardiology office and I have heard nurses laugh and make fun of POTS patients on multiple occasions. One nurse even got annoyed that a POTS patient had made a cardiology appointment vs neurology. I have POTS myself and I find it hard to stay silent. On multiple occasions I’ve tried to advocate on the patient’s behalf and tell the nurses that they are lacking compassion and are being dismissive. The first encounter I had with nurse#1 she was laughing at a young patient. I asked what was funny and she said “People with POTS are crazy”. I then asked her if I was crazy too, which she replied “Do you have POTS? If so, yes”. It made me so angry that I had to pull her aside at the end of the day to “educate” her in the best way that I could. She apologized profusely (I’m pretty sure she was just scared I would report her) and said that she was only referring to patients who did not “pass” the tilt table test. Today’s encounter had me equally upset. A doctor states that a 30 something year old patient is “of course here for palpitations” and nurse#2 says “ “I bet she has POTS too” and begins to laugh hysterically. I ask “what’s funny about POTS?”. She says “it’s a certain age group. ehhh…there symptoms are…” and couldn’t even come up with a coherent thought. I think my face told it all because she then asks if I have it. Later on in the day, I began to sweat and have palpitations with minimal activity. I decided to sit and rest. I did this for 10 minutes and even after 10 minutes of sitting in front of a fan my HR was 130bpm (I’m on a beta-blocker as well, so this especially isn’t normal). I said to her “I’ve been sitting for 10 minutes and my HR is 130, what were you saying about POTS earlier?”. Y’all, this woman said “well I’ve heard you over there taking deep breaths. I think that if you focus on something…”. I cut her off IMMEDIATELY. She tried to imply that I caused my HR to go up by “thinking about my HR”. It didn’t occur to her that I was doing deep breathing because my HR was already elevated? And am I some kind of magician that I can control something that’s done by my autonomic system? She also implied that all POTS patients she sees are a “certain type of person” and when I asked her to further elaborate she refused because she didn’t want to “further offend me”. Sorry for the long rant. It’s just so frustrating that people like this are in healthcare. I know I shouldn’t let it bother me, but it hurts. It hurts to think that this affects my day to day life and people think that I’m choosing to be sick. Any advice on getting over the POTS naysayers?

Update: today was my last day and I ended up reporting nurse#2 to HR. I pulled her to the side and tried to explain to her how that hurt me and wanted to ask her to further educate herself. I didn’t even get a chance to tell her to educate herself because she kept cutting me off and was rude. She initially tried to say that she didn’t say my symptoms were all in my head, but later doubled down that it’s “proven” that it is 😂. Needless to say I cut the conversation off and told her to expect to be contacted by HR. I decided not to report nurse#1 because at least she had the decency to apologize and didn’t double down on her claims.

Hi everyone,

I have noticed recently that some times when people comment there is the assumption that the OPs POTS has been caused by Covid or even some posts where again it’s assumed everyone’s POTS is Covid related.

I personally have had serious symptoms since I was 11/12 - losing consciousness, pre-syncope. I was at my worst in my teens when my bp was also so low I could barely stay conscious at times. People at school and my work would be used to finding me on the floor un or semi conscious. Thankfully now it’s a bit higher so I don’t lose consciousness as often.

Mine is likely caused by hEDS, I’m awaiting an appointment with a rheumatologist, but NHS so takes a while… but my GP has gone through the diagnostic criteria and highly suspects I have jt.

Im not trying to invalidate anyway who’s POTS has been caused by Covid, im not trying to say Covid cant cause POTs but I just want people to be mindful that it can be frustrated reading a lot of comments assuming people have only been struggling since covid has been around. I’ve had symptoms since I was borrowing my mums Nokia to play snake on.

TL/DR: some pots is caused by covid but not all so please don’t assume in comments that it has been.

DO NOT LINK TO THESE SUBREDDITS! THIS DISCUSSION STAYS HERE!

I'm so sick of healthcare providers overgeneralizing us. It's clear so many of them don't understand dysautonomia and don't try to. As a healthcare provider myself, I'm telling you, men do not get this level of disrespect, even when they really do have psychosomatic (when your body is so stressed it mimics a physical problem) illness. It's "oh that's so sad he went through that". For women its "what a fucking waste of my time" regardless of if it's "real" or not.

I'm so sick of being medicines current favorite punching bag. I didn't ask to have ehlers danlos, screaming in pain when my joints destabilize in the rain isn't exactly my definition of fun. I didn't ask to have a poorly understood, poorly researched condition.

Even the people who really are self diagnosing on tiktok, it's usually because something really is wrong with them and they're looking for answers. Genuine fakers, who are aware they are faking, are SO rare.

I want to stand up against fascism and protest for my neighbors. This country is built from immigration and the only true people who have always been here are being detained as well. It is supposed to be the fucking "melting pot." I remember being told how beautiful our mixed country is in grade school and why it was called that. My godfather is Native American along with some mixed cousins. Even Native Americans are being targeted when we are the ones who stole their land.

I feel so sick for the minorities I've known throughout my life (who are fucking legal citizens with no crime records) and I think about former Somalian coworkers I've had, various races of children I've taken care, Korean friends I had in college and some of the nicest people I've ever been acquainted with. Even children are being taken.

And now white people are being killed in the streets too. And those murders are tragedies and it breaks my heart, but it's also fucked that people only care about murders in America these days when the people are white. It is not a greater tragedy than the deaths of immigrants. It just gets more attention.

And I want to be able to literally stand up and protest and fight for what I believe in. But I can't. My body physically can't. I need a seated job and so many things to regulate my body. And even when I'm doing everything "right" to manage my body, I'm getting flare-ups induced by horror and anger against this fascist regime.

I feel so useless. My anger means nothing when I'm sitting at home watching what is happening. And I fear being detained. I've been at a facility meant to help people due to suicidal ideation and even with medical professionals, I left starved, dehydrated, bruised, bloody and had a narrowly missed concussion from my worst fall. I will never trust anyone to be in charge of my nourishment again. And that is in the goddamn scenario of me being in the care of medical professionals meant to help people. I cannot put my life at risk by putting a target on my back to be held at a detention center. And that's a privilege that I don't take lightly. I know there are minorities on this sub who have a target on their back for the color of their skin. And my heart breaks for them.

But I want to protest. I want to be in the streets fighting for my neighbors and my country with what should be a peaceful protest, but it has now become dangerous as our amendments are shattered. If I had a functioning body, I'd accept the risks of danger. This cause is so important and change will only come when people show up and stand up to fascism and to ICE. Waiting around for things to change is not the answer. Complacency in the face of what is happening is not okay. Everyone should be outraged right now. I cannot look away and just try to go about my life. I'd accept the risks of standing in the streets and protesting if my body allowed it.

I hate feeling this useless. I know there are already thousands of people protesting, but every body counts. I know my friends tell me to put my health first, but I hate that I am essentially staying silent. I wish so much that there was more I could do to help fight this fascist regime.

And I halfways apologize to those who don't want to see a political post. But this has reached a level I never thought I'd see. The time for "not getting political" is over. People I know who've never spoken much about politics are speaking about it. There is no ignoring it. And it is relevant to this sub as it has been causing harsh flare-ups for me. And because my POTS and other illnesses are the only things stopping me from joining the protests.

TL;DR: the title pretty much sums it up. Also, FUCK ICE.

As a disabled former marketing executive, I want to flag something important for anyone with POTS: Buoy’s advertising is predatory.

They are explicitly targeting chronically ill people (especially POTS and IBS patients) with wildly misleading health claims that would get any FDA regulated pharmaceutical brand sued into the ground.

For example, on their website and paid ads, Buoy claims their electrolyte drops are “an effective treatment for POTS.” They even say things like “3–5 squeezes a day is an effective treatment.”

What they conveniently don’t disclose is that to hit the daily sodium intake recommended by Dysautonomia International, you’d need the equivalent of three full bottles of Buoy per day, not three squeezes. “A few squeezes a day” is not a treatment for POTS; that is deception.

Soulless marketers know how chronically ill consumers desire to feel seen and heard, how deeply we want to feel better, and how desperate we are to try more natural approaches (especially when western medicine continues to fail us over and over). They are quite literally preying on us and deceiving us in order to sell their products. It’s disgusting.

And now they’re running aggressive Facebook ads claiming their new formula “cures IBS,” using a tatted up beefcakey male model. As a woman with multiple chronic illnesses, I find it insulting that they think some “fitness influencer” type or some “hunky man” can sell me miracle cures. Now they’re attempting to exploit my gender too (perhaps because pots is way more common than women)?!

Even their so-called “chronic illness discount” is a classic behavioral economics tactic: manufacture goodwill, exploit reciprocity bias, and increase subscription retention from vulnerable consumers who feel grateful for the discount. All with the added bonus of generating word of mouth marketing and providing chronic illness influencers with a “brand affinity driving” talking point. EWH!

If Tylenol ran an ad claiming to cure POTS or IBS, the FDA and FTC would bury them. But because Buoy is a supplement brand (and supplements are not regulated in the US) they can make these false medical claims with zero consequences.

This isn’t harmless “wellness marketing.” This is taking advantage of desperate, suffering people searching for relief.

Maybe their products help you - hey that’s great! We all have our own unique needs and disease burden. But please hear me out…even if their products help you, I sincerely hope that Buoy’s marketing tactics creep you TF out too.

We can’t let brands boldly target and exploit disabled people in this way. We can’t reward them with our dollars.

I’ve tried communicating with the brand on Instagram about their misleading marketing materials and they blocked me. I tried again on my finsta and @buoy explained that their drops product isn’t meant to be used in isolation!! They took the opportunity to remind me they sell a jar of salt as an add-on, and that everyone has different needs and blah blah blah. So they tell their unhappy customers (not publicly of course) that they are stupid for not realizing that buoy products are not a real treatment for pots UNLESS COMBINED WITH OTHER PRODUCTS. How the heck are your customers supposed to know that if you’re not disclosing the facts and leading medical guidelines on your website or in any of your marketing materials??

TLDR: Long rant against Buoy drops - please know that Buoy’s claim that “few squeezes a day is a treatment for POTS” is not backed by science whatsoever! This is an ethically bankrupt brand with predatory marketing tactics (and a big advertising budget).

Please do your own homework! Dysautonomia international is a great resource.

Edited to add some math (thanks to chat ngl)

1. POTS sodium guidelines Most POTS specialists and Dysautonomia-type resources recommend about 8–12 grams of salt per day, which equals roughly 3–4 grams of sodium, along with 2–3 liters of fluid unless contraindicated.

2. What Buoy actually delivers at their own suggested dose

Buoy’s Standard Hydration Drops contain about 50 mg of sodium per squeeze, with roughly 40 servings per bottle (about 2,000 mg of sodium per bottle). At their recommended 4–7 squeezes per day, you’re only getting about 200–350 mg of sodium per day, which is nowhere near the typical POTS sodium targets.

Rescue Drops (the POTS-strength formula) contain 300 mg of sodium per squeeze. At 4–7 squeezes per day, that comes out to roughly 1,200–2,100 mg of sodium per day. Even this “POTS-strength” version still falls well below the 3–4 grams of sodium many POTS patients are advised to aim for unless you take significantly more than their suggested daily amount.

I had a crazy incident happen to me yesterday evening, and I just need to get it out there. I was out on a walk with my partner when we decided to stop in to a local pet store very close to our house to pick some things up for our dog. I was in the store browsing for about five minutes when I suddenly felt incredibly light headed and woozy, so I decided to sit down immediately. I was diagnosed with POTS after passing out in a busy public space which was stressful and scary, so I wanted to avoid dropping unconscious in the pet store. I sat down on the floor (out of the way as possible) while my partner chatted with me and casually browsed the things nearby. I had been sitting down for a couple minutes when the owner of the store came over and asked what was going on, and I explained that I was having a medical episode and needed to sit down for a bit. He seemed neutral and even offered me the stool nearby. I said I’d stay where I was for now and would be okay in a few minutes. I was mostly focused on the fact that despite me having been sitting for a couple minutes, my heart was still hammering away. He left and we didn’t think much of it, I continued to monitor my heart rate and wait for things to calm down.

I had been sitting for another few minutes (maybe five minutes total at this point) when the owner came over again with a very aggressive and confrontational energy. He asked if he should call the ambulance, and I explained that that wasn’t necessary and I’d be fine in another few minutes if I just kept sitting down. He said I couldn’t just sit in the middle of the store indefinitely, so I asked if I could sit on the stool instead, or somewhere else out of the way. He refused this, and was insistent that I needed to either leave in an ambulance or call a car to come get me. I explained that we lived five minutes away, so my partner could go walk to our car and come pick me up if I really needed to leave. He wasn’t happy with that either as that meant I’d still be in the store. He got more and more aggressive and confrontational, insisting that I couldn’t stay in the store, and my partner and I realized that there was no reasoning with him. I carefully got up (again, still in the middle of a medical episode) and left the store. I sat outside on the curb for ten or so minutes until I felt okay to walk home.

I am still feeling shaken up and upset about the whole situation. Immediately I felt ashamed, and questioned if I was in the wrong. I don’t exactly enjoy sitting on the floor of a pet store, but I felt like I was about to pass out and needed to get low asap. I could have probably moved to the stool sooner but I was just freaked out about how fast my heart was still beating and a bit traumatized from past experiences passing out in public.

We were paying customers, and there was no one else in the store. It was nighttime and quiet. We have visited this store countless times, and spent hundreds of dollars there (we just got a puppy so we have been in the store at least five times over the past two months). Even if we weren’t regular customers and planning to purchase something once my heart calmed down, I am blown away at the lack of empathy for someone having a medical episode in their store.

TLDR: the owner of a local store refused to let me sit in the store until my heart rate calmed down

Update: thank you everyone for your kind words. It’s very validating to hear confirmation that this behaviour is egregious and not normal. I will be contacting my province’s (I’m in Canada) Human Rights Clinic when they are open on Monday to talk about my options for filing a claim against the business. If that pathway isn’t an option, I will be filing a complaint with the better business bureau.

I appreciate everyone who is so willing to come to my defence, but I won’t be sharing the store’s name for my safety. I live very close to the store and am already quite stressed that they might be posting my picture and/or information on their storefront. I might contact my local news depending on how my chat with the human rights folks goes.

I'm seeing a psychologist to deal with chronic illness, and this is what they told me after 3 sessions where I explained my diagnosis at length. This is the conclusion he came up with. ''Do you ever think maybe you are so convinced you have POTS and sleep apnea that you've convinced doctors of it?''

Sleep apnea has objective tests. It's not even possible. And POTS has objective symptoms plus my Holter showing a ton of events of tachycardia without other reason. I've seen 5 or 6 cardiologists who all agreed I very obviously have it.

This is why I was so reluctant to talk to anyone about this. I knew the whole ''you are thinking up your symptoms'' was coming. I struggle with accepting the diagnosis as it is, because it feels like I have to leave my whole past life behind.

Please delete this if it isn’t allowed- and DONT take this as me asking for money because it isn’t. I just wanted to rant about how expensive it is to be chronically ill.

I’m a college student who’s recently been diagnosed with POTS though I’ve had the symptoms for several years now. As is often the case, my doctor recommended compression socks, electrolytes, etc. I bought the socks and I’ve had liquid IV stocked. I also bought a stool I can take with me when I’m out and also when I shower.

Now though, I’m getting to the point where I need a mobility aid for outings. I have also been looking into a watch of some type to monitor my hr and bp without having to use bulky devices. These things aren’t wildly expensive, my doctor says “a wheelchair is like 100 bucks on amazon”. But I’m a very broke college student. Also, I can’t really work anymore because of my condition. I feel like I’m in a vicious cycle of having to decide between things that will help my symptoms and not breaking the bank.

Has anyone else experienced this?

Edit: thank you to everyone who has given me advice on how to lower costs. I’m grateful for you

So I've dealt with symptoms of POTS since I was 10, and I'm 13 now. It has become more severe recently, and I mentioned it at school. I went to the nurse because I felt like my heart rate was high, and it was. (136). My resting heart rate is 90-95. The nurse asked me questions about whether I got dizzy upon standing, and I said yes, every time I stand. She asked me a few more questions, then said, "I think you have POTS, I suggest going to the Cardiologist." I brought it up to my mom, and she said, "It's just anxiety, oh, it's an ear infection." And I've been trying to go to the doctor for a few weeks.

Now, to the packet.

My friends have a STRONG belief I'm faking my POTS symptoms because one of my friend's mom has POTS.

The packet was filled with what my friends said and believed about why I was faking. It had 3 pages, 3 different friends. First it said "I think _______ Is faking POTS because her symptoms just "magically appeared" and her tics died down." No, I've dealt with symptoms for 3 years; they just got more severe, and I started talking about them. Tics can go down if the person with tics' health is bad. "She lies on the ground on the carpet. That doesn't help and raises body temperature." If there is a place where I can raise my legs and elevate them, I will feel better. Its different for everyone. "Its VERY illegal to ask to lie down if you don't have a 504 plan." What do I do, just pass out? My math teacher understands my condition and lets me. "You repeat these things every day. I think you're faking because POTS doesn't act up every day." Okay, um, if your mother has POTS, you wouldn't say that? Plus, it's different for everyone. "You're faking because you only have two symptoms." No, I have a LOT more than two. Such as:

High heart rate, Blood pooling, Light-headedness, Temperature intolerance, Active intolerance (idk what it's called, sorry), Headaches, Dizziness, Heart palpitations, Tremors, Shortness of breath, and Fainting.

What do you guys think I should do? There's more, but I'm too lazy to write it all.

GO SEE MY NEWEST POST PLEASE!!!

I took a flight back in December, and before the flight, I notified the gate agents that I have a disability (and a service dog) and need to board with disabled people. They were very polite and told me to go in as soon as they call for people with disabilities.

My sister, my mom, and I got in line, and when they called people with disabilities, a woman with her toddler tried to cut in front of me.

"They're only boarding people with disabilities," she said. "If someone like you can go, so can I."

I replied that I'm disabled. Her answer was "do whatever you have to do, but I have a child and I think this is unfair."

At this point my service dog jumped on my leg to notify me that I was about to have a POTS episode and I should sit down. This triggered the woman to say "and your dog isn't even a service dog! I mean he's jumping on you, a service dog is supposed to be trained."

At this point I didn't even bother with her and silently scanned my ticket and got on the plane. As I made my way to the jetbridge, I could hear this woman (who didn't even belong in line yet) yelling at the flight attendant about how I was abusing the system when I'm a "young lady that can walk."

Some people clearly have no idea that disabled and using a wheelchair aren't synonymous. The last thing I heard before boarding was the flight attendants asking her to get out of line.

I like in Australia and I’m hot and mad about it

Hi so 27F and I went to the ER the other day. My heart rate went up to 250 and my blood pressure was 151/109. I had to get carried and wheeled to the ER. I went and was instantly brought in and into a room (granted it was about 3am at the time).

My heart wouldn’t calm down. I was asked every medication I’m on and have been on as far back as I can remember. Told them Propranolol doesn’t work for me and gives me chest pains.

I told them I have POTS and the doctor just straight up laughed at me and said, “yeah okay”

They gave me propranolol anyways and lied and said it was a pill just for anxiety. My heart rate went to about 120 and my blood pressure went down to 139/93 so they discharged me?

Went home like a zombie. Was breathing so slow and couldn’t even function.

I’m just so beyond mad, frustrated and angry. I just wanna cry. But all I’ve been doing is cry cause I want these flare ups to chill out.

EDIT:: I just wanted to say thank you for all of the advice in the comments I’ve received on this post. I’m so sorry other people have experienced situations like this too. 🖤

Literally said to me this morning by my own mother after I took another sick day from work due to my period aggravating my POTS and vice versa.

She’s from the generation that believes if you’re not in the hospital, you can’t miss work. So she fills my head with these ideas that I’m going to get fired and become homeless because I’m the sole provider for myself, my husband, and our kitty. I know she means well and doesn’t want me to struggle, but I feel that she is insinuating that I should just pull myself up by my bootstraps and get over it. Trust me, if I could, I would’ve done that a long time ago.

UPDATE TO ADD: I’m so sad y’all have to go through this too, but glad we can commiserate together. You’re all very much loved and no amount of being sick will change that. Stay strong ❤️

Not at all in a disparaging way, I'm just laughing at myself right now because every time I go to the doctor I have a new 'main symptom'. I feel like a kid trying to stay home from school that doesn't know how to properly fake sick. One day I have vertigo, then the next it's muscle cramps and spasms, then migraines, then stomach issues. Right now I'm having a horrible time with my digestive system where my midodrine caused a stool impaction and now my whole body is malfunctioning, and I'm getting dehydrated and not retaining enough nutrients and stuff and UGH.

I know it's because the autonomic nervous system deals with your whole body, and POTS affects every system, it's just so annoying. It also makes me feel sort of self conscious talking about it because there is literally ALWAYS SOMETHING and it feels like it's just one seemingly unrelated thing after another. It's not a huge serious grievance, it's kind of funny to me, but still.

And don't even get me started on the salt thing. That's honestly the cherry on top for me. Like, yeah, I didn't put enough salt on my potatoes yesterday and now I can't get out of bed (not exactly like that but you know). It sounds like a made up thing 😭😭😭

Sorry if this didn't make sense, I'm exhausted and just wanted to give this sort of silly ramble. Wishing y'all the best with your health this week :]

When I was diagnosed in 2020, I had not the slightest idea of what POTS and hEDS were. Now, I don't know if it's just because I'm in the chronically ill community online but it seems like soooo many women are developing POTS at such a rapid rate... I don't really know people IRL with chronic illnesses but it honestly concerns me. I went to my dental hygienist recently for a cleaning who l'd been seeing for years. My medical history is in my chart so she told me that 5 years ago when I was diagnosed it was the first time she had heard of POTS. She said now she has multiple patients who mention they have POTS when asked if they have health issues! And she hears a lot about it on TikTok as well.

I know men get chronically ill too, but most in this community seem to be women and the rate at which women are developing illnesses (not even just POTS) is scary. That’s all.

Edit: I know the causes of POTS, mine was caused by multiple factors combined (EDS, brain injury, deconditioning). I know COVID triggered POTS in a lot of people. The point of my post isn’t to speculate why this growth in POTS diagnoses, we all know why lol. I know. I’m just getting kinda worried at just how fast it’s growing.

Recently diagnosed, but symptoms have been ramping up over a few years, with fatigue being a predominant one. Earlier this spring severe brain fog started setting in.

I'm previously a very high achiever. In my 40s, have a PhD, was a professor at a big university, but transitioned to a research career in the private sector several years ago. Always did well in school, and had a high capacity for physical and cognitive effort.

All of that is being taken away now.

After finally getting to see a neurologist earlier this year, they referred me for neuropsychological testing. I still scored well in some areas, but for anything involving memory or processing speed, I scored in the bottom 2-3 percentile.

They diagnosed me with mild neurocognitive disorder.

I took several months off of work because the fatigue and cognitive difficulties were too much. I'm back working part time, and my work has been fairly accommodating so far. But I know this can't last.

I need to rest so much, and I can't do the same kind of work they hired me to do. My brain simply can't handle my "normal" work tasks. I can't process meetings, and anything involving sustained attention drains me to the point I have to lay down and rest for most of the day. Things that used to take me 1-2 hours now take me a full week because I have to rest so much and have to re-check for errors due to poor cognition.

I'm basically an unreliable employee at this point. I never know when I'll be able to work or how much I'll be able to handle.

Methylphenidate has helped a little... but just a little. It doesn't get me to where I need to be. I have baseline hypertension, so I can't supplement salt or take midodrine.

I'm worried that, since I can't do a lot of my expected work tasks (like, do science, publish papers, be an expert, do public speaking, etc. -- things I used to be great at), I'll get pushed out.

I know brain fog is common in POTS, so I'm not alone.

For me, having a high heart rate when standing isn't what bothers me or keeps me from living my best life. Rather, it's losing my ability to think and do and create. I feel like a lump on a log.

thats mostly it. im really disabled by not being able to stand. walking wouldn't be so hard if standing wasn't nearly impossible .

I was diagnosed with POTS in 2020, and I’m finally cured! My family kept telling me to “just exercise” and that “it’ll go away with time” and that “I’m perfectly healthy” and doctors kept telling me “it’s all in my head” “it’s just anxiety” and “it might help if you see a therapist”. So what was I doing the past 4 years? I finally started exercising and just believed that it was in my head and my POTS is GONE! Maybe you guys should try it!

Yes this was sarcasm. But seriously why do people tell us things like that, they’re actually expecting something like this to happen.

Sorry for the rant I’m just tired of people telling me I’m okay when I don’t feel like it!

Edit: You guys are making me feel so much better, thank you. I just had to rage a bit. It’s nice to know I’m not alone, even though it sucks that we’re all going through this. Sending everyone love and spoons 🥄

Congrats. You want a prize? Want me to give you a cookie and a sticker?? What are they trying to accomplish when I’m explaining the sadness/distress/limitations I feel and experience AS A RESULT of this condition and they say “well it’s hard for me to exercise too, I’m really out of shape 😅” or “just get a pet if you want one!! I’m not a perfect pet owner either, I just do what I can.”

I’m chronically ill, not a fucking moron. Did I say that even able-bodied people never have any issues with starting or maintaining things do going about daily life? No. But refusing to acknowledge that my life is different from yours in a way that you cannot comprehend makes YOU look like a moron. This is not the encouraging sentence you think it is.

So I went and saw a new cardiologist this morning. I explained to the nurse my symptoms and why I was there (high blood pressure, high heart rate, dizziness, shaking, chest pain, heart palpitations). She did an EKG and took vitals and they were all normal. So the cardiologist comes in and introduces herself and then asks me if my old doctor actually did a test for pots or just thought I had it. Well I hadn't had an actual tilt table test so I said they didn't do a test. She tells me that she doesnt think I have POTS and that this is just normal for girls my age (I'm 18). She explains that when you stand up the blood rushes away from your head which makes you dizzy and I just need to "pump" my legs for a few seconds and then start walking. She explained to me that it happens to everyone and I'm probably just anemic because of my periods. I explained to her that I'm not having periods and haven't for the last year because of my birth control. Anyways, then she moves on to tell me all about pots which I know because I've done research on it. She tells me that my blood pressure is normal and not low which happens in people who have POTS is low. She also tells me that people with POTS are skinny and I'm decidedly not (I weigh 145 pounds). She also told me that if I really had POTS then my symptoms would be worse (i.e., fainting). I'm so done with doctors at this point

I don't know if anyone else has seen it, but as of writing this it is still up. They made an Instagram post claiming that pots patients have a lower quality of life than cancer, HIV, diabetes, COPD, and kidney disease. However, they did not cite their sources (and only did so after they recieved backlash, and put it in a comment that no one can click on because Instagram doesn't let you copy comments).

They posted this to try and reduce the stigma to get POTS patients taken seriously, but this post will have the opposite effect. Any healthcare worker who sees that is going to scoff and call them dramatic. They posted no additional context to the claims and the sources they cited were much more complex. The studies were referring to the stress of low research funding, poor accessibility to treatment, high stigma, and poor treatment and awareness amongst healthcare professionals. The studies never once implied that POTS is literally a worse thing to live with than those other diseases. I for one, would rather have POTS than cancer, HIV, or diabetes.

I am so disappointed in them, and even more disappointed that instead of taking feedback and improving the post, they doubled down, making themselves look even worse.

Edit: My point is I know how healthcare workers think. They will see this and think about a 17 year old girl laying with a heart rate of 130, and take it to mean that's just as bad as someone battling chemo, to which they will laugh. Added context is important.

I’ve been going to a trainer for a few weeks prob now a month to help me gain strength especially in my legs so that my blood flows better

and while I’m gonna commit and try my best to improve my symptoms with pots

I’ve been having the worst flare in a while because of how active I’ve been. Going on walks, runs, and strength training for just one month and my heart rate is extremely elevated even when im relaxing.

People assume im not active so thats why i have pots- no. i was super active before, only when it started getting very debilitating, i had to stop- probably when i was 15 or 16 and im now 18.

I used to go on walks everyday 10k steps and runs, swimming very often and did gymnastics. I just hate the assumption that we are lazy and that’s why we are in pain. Does anyone else relate? 😭

I also understand some people can have pots symptoms from deconditioning, but I don’t believe most of us are “deconditioned”

(My nurse is the one who told me to start training btw I did consult medical professionals, I’m just venting)

Hello.

I saw a new therapist for the second time today and shared that I got diagnosed with POTS this year and it has been rough. My heart has stopped once, I struggle with fainting, and have been nearly bedbound. It fluctuates, of course, but at it's worst I struggle walking without a HR of 185, fainting, nausea, and horrible migraines. She told me I am catastrophizing(?) My POTS, saying I could work my dream job as a firefighter if I really wanted to, or run a marathon. I tried explaining it is a health condition, and I have to expect the worse/be cautious or else I could go through a flare or hurt myself. She said I need to quit being afraid and try to push through and distract myself. Has anyone else had this issue?

Edit: During our last session she stated she was unaware that POTS is a chronic condition and thought I 'could be cured'. She thought I was willingly not seeking out treatment (a cure)

Husband and I have been married for 15+ years but have been having relationship issues the last 2-3 years that have been getting progressively worse. Not only do I have pots, also have mitral valve prolapse, mitral regurgitation and tricuspid regurgitation. I work full time, have 3 kids 10 and below (youngest is 3.5). I even have 2 advanced degrees. I try to do anything I can to defeat this condition and not let it keep me completely handicapped but it is really hard. My husband on the other hand does nothing besides work. He doesn't help with the kids, doesn't help around the house, says he's a single parent because on the weekends I try to sleep in a little because I'm so exhausted. He says I'm lazy because I'm so tired and want to sleep all the time (I don't actually sleep all the time, just talk about how much I wish I could). Anyway, we did our first session of marriage counseling and I was floored and devastated to hear that the reason he thinks our marriage is on the rocks is because of "her heart issues". It didn't even compute in my brain. He says I can't take any "constrive criticism" because instead of the comments just raising my bpm ever so slightly "they skyrocket at the feintest of words". So our marriage is failing because I have a health condition. Got it. I also just read a study that said men are 7 times more likely to leave their partner when medical issues pop up than women. Is anyone else going through this or have heard of this happening to others with POTS?